Hi, I’ve just turned 29 and have been diagnosed with relapsing remitting ms after having an mri in July for one episode of a numb face back in January.
I had my first appointment with a neurologist a couple of weeks ago, he told me about all the different DMTs to think about and have been booked in for another mri of head/spine with contrast but my next actual outpatient appointment came through the post and isn’t until mid March next year!
Is that just normal post covid nhs waiting times??
This is going to be a long 4 months of thinking about what’s next!!
Hi
Freya
I’ve not been diagnosed yet but when my doctor said about referring me to a neurologist on the NHS he said it could take a year/a year and a half to be seen. I went private because I didn’t want to be sitting worrying but even a few private clinics i rang said it would be Feb/March before an appointment is available. I think everything is just super back logged atm with covid. Im new to this so this is just my experience. You can always ask to be put on a cancellation list. Xx
Standard procedure is for an annual appointment with your MS Consultant but you should have been introduced to your MS Nursing team by now. They look after day to day treatment and you should bring any other issues to their attention first and they will escalate to the Consultant if they deem it necessary.
Situation normal for MS. It’s usually a slow-burning condition that will take decades to unfold but some people have much more aggressive forms which need more rapid attention. Be master of your own body and report anything untoward.
You may have to be pushy to get yourself onto DMT’s, particularly if you feel your condition is worsening.
I’m guessing it varies between areas somewhat, but I was told that MRI’s would be yearly post-diagnosis. If you’re already diagnosed and they’re happy to look at treatments, then the MRIs are just to look for changes and check whether the disease is in an active stage.
It took me about two years to be diagnosed, from first seeing my GP through to actual definite diagnosis, although I have primary progressive MS and things have been progressing fairly quickly, which I guess makes it easier from a diagnostic perspective.
As GCCK said, you should by this point be under the care of an MS team. Again, I’m sure there’s regional variation but for me that means I have my neurologist, but I also have an MS nurse and I have a number I can call which takes me to an answerphone in the neurology unit; if I have any questions, concerns, change in symptoms or what have you, I can leave a message explaining the situation and my MS nurse will call me back, and can also talk to my neurologist at their weekly meetings and if needs be he can bring me in for an appt. Through my MS team I also have access to other services, like physio, bladder and bowel, psychology and so on. In theory that should also be the same for yourself, so that if you have concerns or questions about the wait time you can talk to them and they can explain the situation to you. I’ve not found massive waiting times for MRI (4-5 months or so) but again it’s going to depend on what the situation is where you are.
MS is a slow disease - everything about it is just really freakin’ slow. Diagnosis is slow; treatment access is slow; testing is slow. If you’re lucky, progression is also slow. At this stage of the game if you’ve been diagnosed and are looking at treatments, then what are you waiting for the MRI for? I mean, obviously they’ll want to keep an eye on disease progression, but I mean, what is it that’s concerning you about the wait? (Sorry if I’ve missed something). Honestly the worst part tends to be waiting for a diagnosis. From this point out you’ll probably have semi-regular MRIs, so eagerly worrying about what they’ll find could take up a lot of your time.
I’m not waiting for a MRI, I’ve already had one which led to me being diagnosed and then I am booked in for another one next week with contrast.
But I was just saying that I had one appointment with a neurologist who said I had RRMS and what the next steps would be choosing a DMT etc, but then my next appointment has come through the post and its not until March (I am guessing I’ll meet my MS nurse then by the sounds of everyone’s replies)
MS is not necessarily a slow disease. I’ve gone from EDSS 0 to 5.5+ in under 5 years with a Progressive form of MS. Admittedly I was undiagnosed (misdiagnosed) for 4 years but that rate was without any meds and they still took a wait-and-see approach once diagnosis was made. I’ve had an unpleasant fight with my MS Consultant and Nurses to bring forward a review and start some treatment. Their sheer obstructiveness has been staggering.
For 85%, MS is the RR-type and the majority are on and generally respond to DMT’s and for the majority, MS can be managed into a slow-burn over decades. Not all, obviously, and I’m certainly not diminishing the impact MS has on lives. However, “the system” should be better at spotting the exceptions and more inclined to respond accordingly.
The next week or so will determine my next course of action:
satisfaction with the response I’m now getting, following a case conference and new tests
get second opinion
consideration of scope for legal action for negligence
I’m not naturally litigious but have been driven to this.
Ah, I see now! I’m sorry, my mistake entirely.
It’s likely to vary depending on where you are, but I was told (Wales) that for a diagnosis of RRMS - and so to qualify for a DMT - they need to see that you’ve had at least two relapses and they need an MRI with contrast. For some DMT’s they also need to see evidence of new lesions on an MRI as compared to your last MRI. They stand a better chance of seeing this if they wait longer between MRI. You might find that your Dr is trying to make the appt far enough away that by the time he sees you, you’re likely to have had the MRI and the results will have been read and sent back to them, as this will increase the number of treatment options available to them. Or it might just be the next available appt! You may be able to telephone your neurologist’s secretary and ask if there is any reason for the delay given in your notes.
(This is just what I was told by my neuro when they were ruling out the relapsing form in my case, so it might not be the same in your area or under your neurologist).
To be honest I think the waiting time is a combination of far too few neurologists (was bad before Covid) - we have 1/8th the number of neurologists per head of population compared with most of western European countries, and now the effects of Covid on waiting lists.